Category Archives: Emotions

A feeling of peace

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Today is the first day of holidays for most teachers and students in Victoria, Australia.

I am sitting in my lounge room watching Bargain Hunt on television, feeling a little pain but a lot of peace.

It is a good time to bring my thoughts together in words. These are my thoughts:

The working year is finished. I don’t have to plan anything right now, but I will have to at some point in the next month.

As exhausted as I was I attended the staff Christmas social function. I dressed up but I’m not sure I looked ok, I think I looked fat and was boring. I was too tired to know.

My son graduated from his postgraduate study on the weekend and it was a great day. Strangely, I really enjoyed the graduation ceremony and the speeches. I am very proud to have a son who achieves highly academically and who cares a lot about others.

My family visitors have returned home and it was lovely to see them as I won’t see them on Christmas this year.  I hope they don’t think that I am becoming a sad, tired lump of a person.

My niece is the cutest little thing. I can’t wait for the next baby to arrive.

I have a short manageable to do list for the next few days. But right now I don’t want to move.

In six days I head to England for 3 weeks of adventure. I have no idea how this will go.

My coughing is gradually going away again and I have to feel well by Sunday, cross fingers.

Tea tastes wonderful on holidays.

Cheers to a restful day.

A work friend gave me this cute red teapot set, she said it just reminded her of me the moment she saw it.

A work friend gave me this cute red teapot set, she said it just reminded her of me the moment she saw it.

Worn down

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The Twelve Apostles, a group of limestone pillars off the south coast of Victoria. There are only eight pillars remaining.

The Twelve Apostles, a group of limestone pillars off the south coast of Victoria. There are only eight pillars remaining.

Chronic illness wears you down like a rock. Even when you have had good days and you start to think things may be looking better, things may be turning around… there it is again… the feeling of unwell. Drowning in pain and temperature and confusion. No one knows what it is like and the people looking at you can not even tell.

Like a rock, will you be worn down until you become smaller than a grain of sand, until you become nothing?

Single and sick

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Retro dating

If you are chronically ill, you try to avoid putting the negative effects of your illnesses on anyone, including partners, families, work colleagues, friends and strangers. As a single person then, it is difficult to take the plunge to try to meet new people. Who would want to be with me and my illnesses? How could I inflict this life on someone? Dating is also so emotionally taxing and exhausting. The other day I said that I think I can’t be bothered. My son told me I need a different perspective to the situation. I guess I do but it might take someone to educate me to see it differently.

There was a time when I was married to a very generous, supportive man. I know he would stand by me no matter what. I failed that relationship, not him.

Then I was in a relationship with a man who is bipolar, narcissistic and unable to show empathy unless he is trying to get something out of you. He failed me and left me three weeks after my diagnosis with fibromyalgia.

Right now I am flaring, sick, dealing with new medication and all round mentally exhausted. I am not as active as I want to be and would be poor company most days. I am also 41 and becoming very comfortable running my own life solo.

I am starting to consider the possibility of finding a new mate incomprehensible.

How can someone who is so frequently sick and no doubt very hard to coordinate time with (and put up with) find someone who will be supportive in this situation?

Surely the initial meeting someone and having early dates requires you to be at your best physically and mentally?

When should you tell a new person about your illnesses and your struggles?

How could you put the struggles you deal with daily into the life of another person?

How would you even find someone compatible at this stage of life?

These questions are not all unique to dating, or finding a partner. However, in the mind of someone who is chronically ill, the odds seemed to be stacked against you. You could have the most interesting, engaging personality most days, but one day you’ll be in pain, medicated up and foggy and you won’t be so attractive anymore. Then this will become more than just one or two days, when you have a flare and you can’t make it out of your bedroom. Suddenly you won’t be able to give anything of yourself but you will want your partner to somehow understand and support your random needs. No one would want this.

So, this is my perspective. Please tell me another way of seeing this situation of being single and sick. Maybe I need to hear success stories. Are there any?

A Quick Coping with Chronic Illness Quiz

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A Quick Coping with Chronic Illness Quiz

Question 1.

You have had a busy week, worked hard and kept up with life’s requirements and responsibilities. It is Saturday and your family is all out for the day, you are home alone. Do you:

a) Sleep in bed all day and have a shower just before anyone comes home

b) Write a list of all the jobs you need to do around the home and get as many done as possible

c) Get dressed in your favourite jeans and top and head to the local shopping centre for a days shopping, coffee and the beginnings of painful feet

d) Spend the day reading, sipping cool drinks and enjoying the peace and quiet

Question 2.

You have your bags and you are heading home after a busy day at work. Your body is telling you to sit down and your feet are starting to shuffle. A co-worker sees you walking past and calls out in a panic for your help with a cut and paste disaster on a Word document. Do you:

a) Tell them they will work it out, otherwise to redo it, and keep walking

b) Tell them that they will have to find someone else, that you’re leaving

c) Go over and manually help fix the document

d) Tell them the name of someone else who is good at that sort of thing

Question 3.

Christmas Day is approaching and your family, who live in another state, has been asking about whether you will be flying to be with them on Christmas Day. You haven’t been well and you have a long holiday trip planned for after Christmas, which you haven’t really saved properly for. Do you:

a) Tell them you are coming and then find the cheapest flights available

b) Tell them that your health has been bad and that you need to rest before your trip

c) Tell them that it is just one day and that you will ring them, that will be sufficient

d) Invite them to come to your place instead, knowing that they will never do that

Lotus flowers

Answers

Question 1.

All of these answers are acceptable, it just comes down to which option makes you feel most happy. All options have flow on effects, especially mental ones, such as the satisfaction of getting jobs done around the home or the feeling of restfulness and centredness after spending a day relaxing with a book, so remember to consider this as well. What will you get out of the action v’s what do you need right now. It is important not to keep thinking over the other options all day with guilt that you didn’t choose them. Choose your option and enjoy.

Question 2. 

The right thing to do here is c. This should be a quick fix to help someone and then you will be back on your way home. However, depending on how tired you are and how much pain you are in, the other options may slip out. Be careful to not let illness get in the way of you being the person you are without it. Checking your inner voice to make sure it isn’t driving negativity is very important and it can be hard to do that when in a lot of pain. If you do slip up, don’t forget you are human and you are in pain and sometimes you can’t be everything.

Question 3.

The problem with this question is that you probably want to jump on a plane and go be with your family for Christmas. However, life with illness means that you have to plan your energy use very carefully. Your body doesn’t care if it’s Christmas Day, your birthday, graduation day, the day you are presenting a proposal to your bosses, your children’s school concert day, the day you leave for a trip overseas, etc. Your body needs rest constantly, in order just to get through a normal day. Be very careful with planning big events and trips. Sometimes you will have to say no to some things in order to say yes to others. Don’t fight it, it is just the way you have to live with chronic illness.

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It doesn’t matter. Be kind to yourself.

Learnt behaviours

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I know that I was taught to work hard.

I know that I was taught to persist.

I know that I was taught to be tough.

I know that I was taught to strive for success.

but

I am not sure if I was taught to find enjoyment just for enjoyment’s sake.

I am not sure if I was taught to seek happiness.

and

I know I was not taught how to deal with obstacles that mess with your mind and your life.

Please enjoy your only life

Chronic illness and a changing self

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chronic-illness-wisdom-title

Chronic illness eventually changes the way you think about life.  This seems to happen bit by bit every day. The speed of this change would depend on the illness severity and the personality of the person.  I actually think I can feel my thought patterns changing. Not only has my body slowed down, but my thinking and decision making has become a lot more controlled.  I am becoming a lot more wary of tension and emotional build up. Some people may look at this and think I am not excited or passionate or involved. I am those things, it is just a slow, paced excitement, if you get what I mean. I also make decisions based on something other than head or heart, but I am not entirely sure what it is. Maybe I have started making decisions based on intuition about what I need?

Here are some thought patterns that become the mainstay of those who manage illness over a long period of time:

– Treasure the small things.

– Treasure special times with family.

– Evaluate what is really important.

– Make the most of every opportunity.

– Make the most of the life you have been given.

– Only I understand what I am going through.

– I have to prioritise my needs over what other people expect of me.

People with chronic illnesses only have limited energy, limited patience, limited effort. Anything too draining emotionally or physically has to be cleansed from your life. Deciding what and who is important and what/who needs to drop by the way side is important.  You have to choose quality over quantity in many things, including relationships. It just isn’t worth it to have negative and toxic people suck the life out of you, literally.

Every day can be a different challenge and this never stops. You try to plan around your individual needs, but this doesn’t necessarily go to plan. Every day is a new day and we never know how that day will go.

Can you feel your inner self changing? What is new? What have you left behind?